The hospital admission merry-go round

[pineforest]

I know I won’t be the only one, but I am exhausted by my father’s seemingly never ending hospital admissions.

He is 77 and has stage 4 prostate cancer as well as mobility issues and severe swelling (edema) in the legs meaning he is basically housebound. He is also overweight due to lack of mobility.

For the last 12 months we have been trapped in an endless cycle. He will be admitted to hospital due to an infection. These seem to switch between a UTI and cellulitis of the leg. He’ll be there a week on antibiotics. We get him home, spend 2-3 weeks trying to get him back to his normal routine only for a week later him to end up back in hospital again.

We have a district nurse visit twice a week to clean and dress his legs. He also has a carer twice a day (only for 15 mins a time). But it’s exhausting. Everytime I think he’s back on the up….ill get the call saying he’s taken a turn again and ends up back in A&E.

Today I get that call from my brother who says dad isn’t well, leg is hot and he is confused. So ambulance called and he is admitted again for cellulitis and more antibiotics.
The hospital can’t seem to give me an answer on why this keeps happening and how we can stop the cycle. They just say once you’ve had cellulitis you’re more prone to it and his cancer also means his immune system is low.
I don’t want to lose my dad (my mum passed say last year) but his quality of life is so poor with these constant admissions and infections. He keeps saying he doesn’t want to be here anymore.

I’m not sure what I want anyone to say, I guess I just needed to write it all down.

You should have a Virtual ward / Rapid response service if you live in England that he can be referred into to try and keep him at home. Google it for your location. Does he have a respect form? What are his wishes?

Essentially you can’t stop him being ill but his admissions to hospital can be looked at and whether community care would be more appropriate. There is huge push for community treatment these days. Maybe worth a discussion with his GP.

Yes virtual fragility ward has been mentioned before. But that seemed to be more about accessing blood tests and physio at home. When dad seemed unwell again today we called the district nurses who said to call an ambulance to take him to hospital.
He has a DNR form. I don’t know if that’s the same as a Respect form.

Is it time to consider a nursing home so that he can receive more care?

For his legs - Does he wear prescription compression socks/stockings? Does he moisturise his legs? Would he do any seated physio to move his legs?

For the UTIs - Is he drinking enough to help prevent them Would a low level prophylactic antibiotic be a thing to suggest to help prevent them?
Or is his prostate preventing him from fully emptying his bladder? Has he/could he have a TURP? Has once/twice daily self catheterisation been suggested to fully empty his bladder?

Is he on any antidepressants? Have they been considered?

How well controled is his cancer? If his immune system is low, is he having chemo/had chemo? Have alternatives been discussed such as antiandrogens like enzalutamide?

Are you able to advocate for him with the Drs?

I work in a Virtual Ward team and we treat acutely unwell people - we do bloods, monitor them, give IV anti-biotics if needed, prescribe whatever they need, titrate medications etc. We are overseen by a Consultant adn a team of senior ACPs. We have access to therapy if we need it but our patients are monitored like of they were on a ward, we also have rapid access to packages of care. Sounds like you have been given duff info on what they actually do.

It isn't a 'fragility' ward either but available for anyone who is acutely unwell. The majority of our patients are over 70 but we have many in their 50s and above.

He should have a respect form instead of the old DNAR forms which were phased out a while ago. For a lot of our patients who have repeated admissions they choose care at home over going in and the respect form can reflect this. The District Nurses should be referring for community care as first line not straight to A&E, there is so many more treatments available at home now and we only send folk in if we really really have to.

https://www.england.nhs.uk/virtual-wards/

To answer some of the questions …

He doesn’t have prescription stockings as his legs are so bad they are cracked and leaking fluid. They are heavily bandaged and these are changed and legs cleaned twice a week by the nurse.

Prostate cancer is very well controlled. Although it is stage 4 (in his bones but no other organs). His PSA level is low and stable. He is on abiraterone as well as zoladex injections.

He has been offered but rejected antidepressants.

He has been having catheters for a while now due to repeated infections and also mobility issues meaning he was not always getting to the toilet. Again these are attended to by the district nurses.

A low dose antibiotic has not been mentioned but I will ask when I visit him in hospital tomorrow.

Sounds like I need to speak to the virtual ward as we have only been offered home blood tests or physio from them. The physio was just someone coming round with a paper print out of exercises. Not actually helping him with them or showing him.

As far as I am aware, his DNR form is to say he doesn’t want resuscitation incase of cardiac arrest and is fairly current (signed in the last few months).

Any sign of infections we’re always told by the district nurses to call and ambulance to take him to hospital.
He’ll be there a week then sent home and the cycle starts again.

He would not consider a care home. He wants to be at home. But he also often says how he doesn’t want to be here anymore.

Catheters cause infections - so I’d be asking the GP if the catheter is likely to be causing infections rather that helping… it’s tricky as it does sound like his quality of life is quite poor. What does he say he wants? Could you ask if his legs might be treated using the wet leg pathway to actually try to heal them up rather than patch them up?
Sounds tricky all round for you all.

Services available locally do vary - my county has only just switched over to Respect forms about 3 months ago, whereas some counties have had them for years.

I would ask for a GP review to talk to him about his wishes and to look at overall management in your area. If he’s had enough, it might be that the emphasis of treatment could change, though it might just be that there isn’t much of an alternative - that his legs would be really painful if not treated.

Would he consider a month respite in a care home where he'll get daily medical attention . That would help with the infection cycle. He'd be more comfortable then. Ask him to think of it as a holiday.

You are right, he’s caught in a vicious cycle. His infections are not going to stop, and it sounds as if your virtual ward/hospital at home service is not able to give it antibiotics in the community (ours isn’t either). Brutally, he has two choices a) carry on with the infection - hospital - treatment - home - infection cycle, or b) make an active decision not to go to hospital next time he gets an infection but to stay home (maybe with oral antibiotics) and take his chances. Do you think he’d be willing to have a serious conversation about that with his gp?

I think he would be willing to have a chat with the GP. However, GP hasn’t been of much help throughout his illness’s over the last few years.

I saw him in hospital today, the cellulitis is now in the blood causing bacteremia. They said yesterday things were really bad, but today his blood pressure/heart rate have stabilised. Which is a good sign but he’s not out of the woods yet. They’re treating him with IV antibiotics. He was very confused when I saw him, which was upsetting. Doctors said it’s the drugs and also dehydration.
No one seems to want to address the underlying cause and the constant cycle of infections.
I’ve asked for the hospital consultant to call me but have had nothing as of yet.

I didn’t know something like this would be an option to be honest with you. Trying to care for him at home is becoming really difficult.

If he's needing IV anti biotics a nursing home can't give IV's so he would have to go in anyway. Nursing homes are v infectious places, not for those with compromised immunity

hi all, just popping on with an update.
dad has sepsis this time, they said it was touch and go but he seems to have stabilised now in terms of his obs. Infection levels on his blood tests are coming down but very slowly. Very worried about how he will come back from this. He is very confused and just says he is so tired.
the hospital are pumping him full of antibiotics and fluids and I just have to hope he comes through it. His quality of life was already so poor with lack of mobility, I feel this time post discharge is going to be even harder. Not that there is any suggestion of discharge just yet.
anyone been through sepsis with an elderly relative? How did they do post treatment?

My uncle had the same problem with cellulitis for years he really suffered and took countless antibiotics. He eventually went private and had it lasered - sorry I don’t know the exact procedure- and he has had no problems since. I know your dad has other health conditions which may prohibit this but it could be worth looking into.

I haven't dealt with sepsis but I've done the hospital back and forth. Sorry things have got worse. If your dad pulls through, I would push for a period of rehabilitation in a care home or nursing home rather than a discharge home. As @justasking111 said, explain it to him as a break where he'll get looked after to get well enough to go home. Ask to speak to the discharge team and be firm that he can't come straight home as you can't care for him there and you don't want to just repeat the cycle of deterioration and readmission. Also, I don't think you will have much luck getting the consultant to ring you, but I would find out when they will next be on the ward and make whatever arrangements you need to be there at that time to speak to them. Take a notepad to write down answers to questions. 💐

Not sepsis, but have done the endless admissions/infections. For us the admission was usually because of a fall, and the infections then developed in hospital. Each time my relative went home, I was constantly wondering if she'd survive the next episode. Two years of this was then followed by a much longer stay, she lasted five hours at home after being discharged from that before being readmitted.

Two months into that next admission, the doctors called me in to say that they could see no end in sight, and that my relative was becoming very distressed by the blood tests and the treatments. By this stage she had next to no cognitive function, couldn't do much more than lie in bed, and it was suggested that they stop actively treating her and move her to a nursing home. She died 12 days later. She was 95 but the last six months or so of her life was little more than an existence to keep nurses and carers busy and it was cruel to prolong it any further.

Probably not what you want to hear, I'm sorry, but if it sounds like things aren't going to get any better then sometimes continuing treatment isn't the right way forward.

Probably not what you want to hear, I'm sorry, but if it sounds like things aren't going to get any better then sometimes continuing treatment isn't the right way forward.

Sorry OP but I agree with this.

You need to step back, too. Caring for him is becoming unmanageable for you.

Unfortunately the most likely reason no one is addressing the underlying cause is that your dad is very frail, with multiple illnesses, none of which are fixable. A fit and well young person can take months if not years to recover from an episode of sepsis.

Ultimately going into hospital for every infection is a choice. Many people reach a point where they decide the benefit they are getting from each admission is so small they would rather take their chances at home.

I'd suggest trying to be present on the next Consultant ward round, and if he gets home asking to see the community Palliative Care Team.

thank you to everyone who’s left a comment, just popping on with another update.
dad was discharged home on Monday after over 3 weeks in hospital. We have carer visits 4 times a day for now and it’ll be reviewed in a week. He’s very weak and very distressed after such a long hospital stay. He’s telling me that if he becomes ill again I shouldn’t call an ambulance and just leave him. His swollen legs have gone down but I think that’s in part because of 3 weeks in bed with them elevated. All his prostate cancer medication was stopped in hospital but they want him back on it now he’s home.

cellulitis lead to sepsis, they say he’s clear of infection now and have reinstated district nurses to come twice a week to dress his legs….feel very anxious as I’m sure in a few weeks he’ll be back there again.
I spoke to the docs in hospital and suggested would a daily low dose antibiotic help with recurrent infections…they say no. They said the dressings on his legs just need changing twice a week and to elevate the legs to help the edema and swelling.
all things we’ve heard before and already happen.
Just have to see how things go. Find it hard to hear when my dad says he wishes he just died of the sepsis - like he is annoyed we called an ambulance for him.

exhausting

Please speak to the GP and consider palliative care community team referral / respect form. It sounds like this merry go round is not what he wants.

Hi, I'm a district nuse, it is an ADRT (advanced decision to refuse treatment) he needs to consider with his GP, if he wants no treatment for infections in future.

I'm assuming the confusion has gone and he now has capacity? If so, it would be worthwhile considering an LPA for health, they can be done easily online, but can take a few weeks to come through.

An ADRT would take precedence over an LPA, but an LPA can still be useful for decisions not detailed in the ADRT should he lose capacity either temporarily (for example due to infection) or permenantly.

There was a great comment on another thread by someone who works in this area. Palliative care is for the last year, not the last week.

If you can find a way to get advice from them - it may be beneficial in breaking the cycle of admissions. Also worth trying the virtual ward on that front. Phrases like ‘how can we avoid the next admission’ ‘ can we put a plan in place for what happens when gets another infection because the ambulance and A&E and admission sequence isn’t working’.

It’s hard OP, you have my ear. FIL’s legs are the same and the elastic for the catheter bag doesn’t help matters. Between dodgy catheters and the cellulitis he’s had sepsis a few times now, and bounces back each time. I say bounces, more like flops. It is exhausting.

@Assssofspades - LPA requires certification these days which entails somebody (not family or their partners) to talk through the whole process with the person giving permission for the LPA. The person needs to have known the person for quite some time too, minimum 3 years i think. The alternative is to use a lawyer or an independent social worker who specialise in the area of capacity, mental health and the Human Rights Act. The latter is the route we used. The forms can be completed online but they have to be printed, signed by the right people in the right order and then posted to the Office of the Public Guardian. It then takes a minimum of 8 weeks for the LPA to be granted. LPA for health and welfare can only be used once the person is deemed no longer to have capacity (unlike the one for finance which can start immediately).